On the evening of 5th of May this year (2023), we took Adam, our beautiful, brave 3 year old son, to A&E as he was very unwell with a bad cold and cough. They ran some blood tests and found some abnormal results, which could not be fully explained. It was thought that the infection was the most likely reason for the abnormal results, but it was at this stage the doctors first said that it could also be an oncological problem. Hearing the word cancer related to your child is absolutely hellish. I will never forget the room, the moment, or the doctor who reluctantly and very sadly told us that our worst nightmare was becoming true. Our world came crashing down fast.
We spent the next week in hospital doing tests, culminating with a bone marrow aspiration. Adam’s infection was getting better while in hospital, but his blood test results were not. By the time we did the aspiration, we knew that something was seriously wrong. In the end all the tests confirmed Adam’s diagnosis: juvenile myelomonocytic leukaemia (JMML).
JMML is a very rare, very aggressive and difficult to treat type of leukaemia. The only known treatment that offers hope of a long term cure is a bone marrow transplantation. Adam’s prognosis is lowered because of a number of factors including: his age and his platelet count and percentage of HbF at time of diagnosis, as well as the fact that Adam’s JMML is driven by two high risk mutations. Adam ticks all the very high risk boxes for JMML and as a result it’s clear he is in need of an urgent bone marrow transplant to save his life.
Adam is currently receiving “hold up” chemotherapy with the aim of slowing down the progression of the disease while we are on the waitlist for the transplant. In Germany, there is a hospital highly specialised in the rare JMML, which could perform the transplant within weeks. This is our best chance to save Adam’s life.
Adam is our world. He is our everything and our most precious, smart, beautiful boy, our only child. Adam is so special and full of life, he just adores exploring life and absolutely loves adventures. He is always excited and raring to go to leave the house no matter how small the adventure is to us. He is fascinated by vehicles and the mechanics of how things work. Adam is so so loving and kind. He has a huge heart. He loves giving us hugs and kisses and regularly tells us how much he loves us.
Adam deserves so much to live his life and to have the opportunity to explore everything that he didn’t manage to see yet. He is only three. Please help us to give Adam all the chances that he can get.
We have to do everything that we possibly can to give our sweet boy the best possible chance. We have exhausted other government options to enable this and as a result we’re turning to you to ask you to please help us. We need to raise £400,000 as quickly as possible to cover the transplant and associated costs in Germany.
From the bottom of our hearts, thank you for reading this and having an interest in our story. We are eternally grateful for all prayers and any amount that you can give no matter how small. You can also help us by sharing Adam’s story far and wide.
Please also consider joining the Bone Marrow registry, a successful transplant always hinges on finding the best possible match.